Breaking Silence Through Story: A Narrative Medicine Intervention for Parents of Children With Urogenital Conditions
Sarah Schlegel
20 participants
Oct 10, 2025
INTERVENTIONAL
Conditions
Summary
The goal of this clinical trial is to learn whether a journaling intervention can reduce stress and anxiety in parents of children with urogenital conditions (such as differences of sex development and hypospadias). The main questions it aims to answer are: * Does guided journaling help to reduce anxiety levels in parents of children with urogenital conditions? * What are parents' perspectives on group-based writing interventions for future support programs? Participants will: * Complete a short anxiety questionnaire (the General Anxiety Disorder-7 scale) at the beginning of the study * Receive a physical journal with 5 writing prompts designed to help process emotions related to their child's condition * Complete 5 journal entries over several weeks, writing about their experiences and feelings * Complete the same anxiety questionnaire again after finishing the journal entries * Participate in a 45-minute interview to discuss how the journaling affected their stress levels and gather feedback on potential group-based writing programs
Eligibility
Inclusion Criteria6
- Parent or legal guardian of a child (age 0-17 years) diagnosed with a urogenital condition (differences of sex development and/or hypospadias)
- Able to read and understand English
- Child receives care at Boston Children's Hospital
- Willing to complete a guided journaling intervention (through writing or dictation) over a period of approximately 5 weeks
- Willing to participate in a 45 minute follow-up interview
- Able to provide informed consent
Exclusion Criteria3
- Parent/guardian with severe psychiatric disorder that would interfere with participation as determined by referring physician
- Parent/guardian unable to complete either written journaling activities or dictation
- Inability to provide informed consent
Interventions
Participants will complete the GAD-7 anxiety assessment at baseline. They will then receive a physical journal containing 5 structured, therapeutic writing prompts designed to help process emotions related to their child's diagnosis. Prompts focus on processing experiences with diagnosis, addressing uncertainty, coping with stigma, and developing resilience. Parents will be instructed to complete the 5 journal entries, spending 15-20 minutes on each writing session at least once per week. Following completion of the journaling intervention, participants will complete a follow-up GAD-7 assessment and take part in a 30-45 minute qualitative interview to further assess perceived changes in anxiety, stress, and coping strategies, and to gather feedback on potential group-based writing programs.
Locations(1)
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NCT06989593